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Anna Rose

On 27th December 2013 at 6.31am, our beautiful baby Anna Rose was born. 7lb 2.5oz of pure scrumminess, we were elated to have a little girl to add to our family. On the surface, she seemed healthy. We were kept in overnight as her blood sugars were a little low and her temperature dipped a little, but other than this nobody had any concerns.

I had a fairly uncomplicated pregnancy. Everything appeared fine and well on our prenatal scans. But I did notice she moved a lot less than our first child, Leo, did whilst in utero. At around 18 weeks, I had some stomach cramping which resulted in a trip to our maternity hospital, but everything seemed fine and we were discharged after an hour or so. Later that night I had a bout of stomach upset, so my partner Sam and I just put the cramps down to that, although looking back this is probably when CMV hit us.

At just 3 hours old, Anna had her first newborn hearing screen. She failed both ears. We weren't worried, she had been born in the birth pool and there was meconium present at birth, so we assumed she was most likely just bunged up. We were moved to the postnatal ward where a second screening was completed. Again, she failed. The hearing test was repeated once more the following morning before we were discharged. This time her left ear failed, but her right ear passed. We were discharged home with a follow up appointment with the audiologists from Birmingham Children's Hospital. Whilst at the hospital, Anna started having choking episodes. Again, we didn't think an awful lot of this. We thought she was just trying to rid herself of post birth fluid. I was, however, beginning to become a little concerned. Although she looked and seemed well (her apgar score was 9), I just couldn't seem to shake the feeling that something was wrong.

Anna's follow up appointment arrived, this time she failed both ears. I cried when we left. I don't know how but I just knew there was more to it than her hearing. We were referred for a more extensive hearing test. Again the results were inconclusive so the decision was made to perform a sedated hearing test. Anna was around 8 weeks old by this point, but she still seemed to hold a lot of newborn like qualities. Her hands were constantly balled into fists. Her head control was not improving at all. She had vacant episodes where she would just stare at lights. The choking continued. She wasn't gaining weight at a great rate. At the time I was breastfeeding, and constantly beating myself up thinking I was doing something wrong. Nobody other than me seemed to think there was anything wrong, no matter how much I harped on about it. When we went for the pre-op assessment, I mentioned all of my concerns to the nurses, who agreed with me and told me to request a full paediatric review through our GP. So that I did.

The GP we saw did a general assessment. She noted that Anna was microcephalic - her head was smaller than it should have been. She referred us straight away. Within weeks we were seen by a consultant at the Children's hospital. It was heartbreaking, but also a relief when the consultant said the words "I agree with you. I think there is something wrong with your baby. We're going to run a series of tests on her and hopefully that will give us some answers". And so it started.

The same day, Anna had an ECG, a number of blood tests and a urine sample taken. In the following months, she had an echocardiogram showing that her heart anatomy was normal, a barium swallow, which showed she had gastroesophageal reflux disease (a surprise to us as she was rarely sick), an MRI and an EEG. The audiology department decided that whilst we awaited the results, they would issue Anna with a conductive soft band hearing aid in the hope that it would help. The day we received the results for the MRI was the most devastating day of my life. Her brain was not normal. The MRI showed large lateral horns, cysts, white matter and that the surface of her brain was smooth rather than ridged. The EEG showed that there was epileptic activity present, however as she had not been suffering with seizures the decision was made to hold off starting with any anti seizure medication. The damage that had been done was irreversible, it had left her with cerebral palsy and developmental delay. At this point we were told that it was one of three causes - a neurological disorder, a metabolic condition, or congenital cytomegalovirus. After a re-test of Anna's newborn heel prick sample, it was confirmed that congenital CMV was the cause of Anna's health problems.

Whilst all of these tests were undergoing, our health visitor was fantastic. It was clear to see that Anna was struggling, so she referred us to our local physiotherapy, occupational therapy and speech and language services before we even had a diagnosis. We started a special needs baby group, which was great support for us both. We were also referred to a dietician to try and get Anna's weight under control. We were offered invaluable support. However I was shocked to see how little even the health professionals know about CMV, especially considering it is the leading cause of childhood disability. Anna was put on prescription formula to try and boost her calorie intake, as well as ranitidine and carobel thickening powder for her reflux, and movecol to try and help with her bowel movements.

On the 19th September 2014 Anna finally managed to have her sedated hearing test. This showed that her left ear is what they refer to as a dead ear, the nerve and the cochlear do not meet so she isn't able to even use a hearing aid. The good news was that Anna's right ear is only effected by a mild hearing loss. She has a little trouble hearing lower tones, but at least she can hear something. Her vision was also tested, which thankfully came back as perfect.

On the 19th December, Anna started having jerking motions that lasted the full day. We were admitted over the weekend so that the consultants could keep a close eye on her and the EEG could be repeated. The EEG showed no significant changes, but we're now on constant watch incase it happens again.

More recently, Anna was admitted to hospital with a severe urine infection. Her ability to fight off infections is lower than usual, which resulted in a raging fever and a heart rate of over 250bpm. She was on IV antibiotics for 10 days, and for the first few days she was also on IV fluids and a heart rate monitor continually checking her stats. It has always been a struggle to get Anna to take her milk at the best of times, and she point blank refuses solids, so the decision was made whilst there to administer an NG tube. She is now having NG top ups and an overnight feed in a bid to nourish her sufficiently. We are also waiting for a follow up up ultrasound to check for scarring on her bladder and kidneys.

Anna is now 14 months old. She does not babble or coo, although she does giggle. She is still unable to sit upright without support. Her head control, whilst improving, is still far below where it should be for her age. We do not know whether she will ever walk or talk, it is just a case of wait and see. Despite it all, Anna really is a little ray of sunshine. For the most part, nothing phases her. She is such a happy, loving child, full of beaming smiles and giggles. She tries so hard to sit and support herself, it is heartbreaking to see her trying so hard for so little reward, but heartwarming to see her inner strength and determination shine through. She really does melt the hearts of everyone she meets.

We're still a mixed bag of emotions. I don't think you ever completely "get over" the shock of being gifted with a severely disabled child. We're happy as she is so happy. We laugh because if we didn't, we'd fall to pieces. But we're terrified of anything happening to her. The littlest thing could knock Anna over the edge. The constant fear of something bad happening to her is overbearing at times, but one look at that happy little face brings it all back home, and we realise just how blessed we are to have her in our lives.

To help me cope with it all, I started a blog - to keep a tab on what happens when, to scribble down all the little things I might forget, to deal with my own emotions as well as my family's. If anybody wants to take a look, to check on Anna's progress or just to reassure themselves that the way they're feeling is normal, the web address is: